Autism, Diagnosis in Later Life

Around 700,000 people, or more than 1 in 100 in the population, may be autistic,

There is no register or exact count kept. Any information about the possible number of autistic people in the community must be based on studies of distinct and identifiable populations.

The latest studies indicate that 1.1% of the population, or 695,000 people in the UK may be on the autism spectrum. If you think that either you or a loved on is autistic, there are a number of resources online. I found the best one to take is The AQ Test. Just google AQ test

This was created by Psychologist Simon Baron-Cohen and his colleagues at Cambridge’s Autism Research Centre. They have created the Autism-Spectrum Quotient, or AQ, as a measure of the extent of autistic traits in adults. The test contains fifty questions, and the score is obviously out of fifty. The higher your score , the higher the likelihood that you might be Autistic. I could not score lower that 40 on it… Eighty percent of those diagnosed with autism or a related disorder score 32 or higher.

This is possibly the first step to take before speaking to a healthcare professional about a diagnosis of ASD

With me, I was advised by Mrs Bob that she thought I might be on the autistim spectrum and so, at the age of nearly forty, I decided to start looking into the condition. The more I looked into it, the more it started to make sense – more so than my previous two diagnoses, initially of Bipolar Disorder in 2003, after a number of unsuccessful suicide attempts and I was given countless types of medication for that, none of which helped me. The other diagnosis was more serious and harder to remove: this was of schizophrenia, which was also eventually found to beincorrect. I must say that both of these incorrect diagnoses were given by a psychiatrist who was close to retirement and was practically phoning it in. He was utterly disinterested in me as a person or in finding the correct answer for me. As a result of these diagnoses, I struggled with many aspects of my life, but that’s another story for another podcast or my new book,

I took the AQ test as my wife had my piqued curiosity about autism and whether I would fit on the autism spectrum. My score was a scary 44 out of 50, so I took the test quite a few times but couldn’t score lower than a 40 so I decided to speak to my GP about a referral to the local autism team. During this time, I was also referred to a number of therapists and most were unsuccessful until I was finally referred to Art therapist, which was the best thing ever as even though I never did any art I got a lot of talking done about my past. It wasn’t fun but it helped, and my art therapist also suggested that I may be autistic,

Unfortunately, due to the length of the assessment process and the staff it needs for each one, there is a two year waiting time to get an assessment in my area, Plus, once I got a date for an assessment I was told that, due to my age, school and parental reports not being available, it would be difficult to get a diagnosis of autism but that wouldn’t stop them assessing me.

The assessment process consisted of three doctors spending two days talking with me and my wife, interviewing both of us together and then each of us separately. It also involved a battery of tests and questionnaires for me, and after a full day from 10-4pm I was exhausted and was told to come back in a few weeks to do another day of tests and questioning so they could make a diagnosis,

I returned for round two and it was a slightly shorter affair than the first, thankfully. I was told to wait while the three doctors discussed their findings. I was very nervous by this point and not feeling myself at all, when they came back with reams of paperwork, to speak to us both.

They explained that, after looking at all the evidence, they were convinced I had Asperger’s Syndrome, which a form of higher-functioning autism. They sat with me and explained how and why they had come to this conclusion. I was very surprised that after this was explained to me, I became very emotional and teary – it was as if a huge weight had been lifted from me and I felt free. It’s as if all the strange things in my life and my behaviour quirks had finally been justified. I had an answer.

After the dust had settled and I began to come to terms with the diagnosis and it’s meaning, lots of things began to make sense: the depression, the sensory issues, social difficulties, etc.

I’m upset that it took so long to get a diagnosis. If I hadn’t met my wife, who isn’t a clinician in any way, I would probably still be undiagnosed now. It’s also a shame that it takes such a long time from referral to diagnosis, and how many adults who are autistic have not managed to get a referral or worse still are walking around undiagnosed and having to struggle with little or no support. This can lead to such issues as depression and even suicide.